Bell's Palsy, Synkinesis and Botox

[Chris-Essen]

I wanted to give a little insight into my experience of Bell's Palsy, synkinesis and receiving botox injections as treatment.

A bit of backround first:

I'm a 26 Year old guy currently living in Germany.

I first contracted Bell's Palsy at 14 in 2003 on the left side, while I was visiting my family in Cumbria. I woke up with a pain behind my ear and throughout the day lost more and more movement in my face.

My family took me to see a doctor at the hospital the next day and I was referred to a specialist in Carlisle a few days later. I didn't receive any medication (steroids) in the first 72 hours, so I think this is partly or mainly the reason why I now have synkinesis.

Anyway, I took the steroids for a week with some painkillers and that was that.

I also had the eyedrops and had to tape my eye shut every night (anyone else know the pain of ripping out some eyelashes when taking that tape off the next morning?? =P )

The left side of my Face was completely paralysed for about 6 months. I then started to regain movement, but progress slowed and eventually stopped at around 18 months.

I will say one thing here: Kids aren't always as bad as you may think they'll be. While at school, I wasn't teased or bullied at all, which is weird because not only could I not move my face, but at first I had problems saying my B's and P's!

I'd had some checkups and therapy in the 18 months in Essex involving an electrode machine and light massaging, but I eventually found that these weren't helping at all. I do wish I had pushed my mum into taking me to Great Ormond Street to see a specialist there, but I didn't think at the time. And honestly, Bell's palsy, as I learned later, hadn't been very widely researched at that point anyway, so I don't know whether it would've made a difference or not.

So that was that.

Then I contracted Bell's Palsy again at 19, this time on the right side. Not a welcome occurance, especially considering I was in exam time at University…

I went straight to the doctor's, this time I was prescribed Steroids within 48 hours and this case went away within 4 weeks, to my neverending relief.

Fast forward to this year: I moved to Germany after I graduated at 21, but had always wanted to go back and see what could be done about the synkinesis on the left side.

Anytime I emote something, laugh, smile, shout, whatever, my face moves completely asymmetrically. I move my mouth and my eyebrow moves with it. I blink and my mouth twitches, a dimple to the left on my chin, a few tendons sticking out on my neck, sometimes twitches in my cheek for hours. I eat and my eye even waters! Always thinking about this, as well as worrying sometimes how my face would age with asymmetrical wrinkles, led me to seeking out on the internet would could be done about it.

I came across this website and have found it immeasurably helpful, and read up on the possible solutions to synkinesis here.

I then asked a surgeon friend to refer me straight to a neurologist.

She asked me some questions about my experience (i explained to her pretty much what I wrote here) and she referred to specialists at a botox clinic in Düsseldorf.

The idea around botox (as backwards as it may seem to treat paralysis with something that paralyses muscles! =P ), is that it reduces the unwanted movements.

So I got a few injections around my eye, on my neck, in my chin and in my eyelids. I think it's been about 20 very small amounts injected over 2 rounds (1st was in January, the 2nd in April. The 3rd will be in July i.e. 1 round every 3 months)

Apparently, I could stop the "Crocodile Tears" as well if I wanted, but that involves an injection into the tear glands behind the eye, which I'm not willing to do.

Anways, the injections aren't pleasant (especially those in the eyelids!), and coming to terms with being a 26 year-old guy that gets botox has been interesting, but overall I'm happy with the result.

My face will never be symmetrical and I'm fine with that. Beauty is only skin deep, and I generally couldn't care less what other people think of me, but the things that really bothered me (like my eye completely closing when I laugh) have become so much better! I'm no longer distracted when I laugh, because I no longer see the eye closing anymore (if that makes sense).

So, I would say, to anyone that's considering botox as a treatment for synkinesis (not for Bell's Palsy!!) should consider going to see a specialist. It took me years to finally get up and see someone myself, but I'm glad I did. Even if they had told me there was nothing they could do (that was almost my answer, considering how old my synkinesis is), at least I would've known for sure and could stop wondering

And to those in general that are finding it difficult and rather self conscious to have this affliction: Learn to not care about other people. Everyone has something about themselves that makes them uncomfortable, we just happen to wear it on our faces. And that's okay. As the old addage go, in the end people are far more concerned with their own faults than to pay attention to yours.

TL:DR - My lazy face doesn't bother me as much as it used to, partly thanks to botox, mostly thanks to not caring about what strangers think of it.

Thanks for your attention in reading my essay ;]

[Chantev]

Hi Chris

I applaud your attitude and your strength of character with dealing with Bell's palsy. I think it will bring much hope for the new sufferers and build up coping mechanism. I have been in a similar situation as you, having come to terms with the fact that my face will never be the same again I resigned not to care about what other people think fortunately I have always had a strong personality and don't take any rubbish from anyone. I invested in a very sharp hair style, stylish and good quality clothes together with a red Chanel lipstick so you can't miss me...I am like I am whether it makes you feel uncomfortable or not.

I have recently decided to investigate further possibilities for treatment and thanks to this media I contacted the John Radcliffe Hospital team of Plastic Surgery. I found them to be more receptive and understand the psychological issues that it brings, while my aim is not actually surgery but I would like to be aware of the nerve regeneration research programme. I will be having Botox again as the previous time I was told that I don't need it anymore by a medical ophthalmology student, hence it prompted me for look for in depth research treatment. I am due my first round of treatment next month after a very constructive initial consultation.

I am in my sixties, lost my job had to take early retirement as my face was not compatible with the corporate image of the company I worked for. Had to gradually come to terms with it. On the positive side I can invest my time in attending various outpatient clinics and concentrate on my health.

It's been good to be able to read about a positive fellow sufferer and I wish you all the best.

[Chris-Essen in reply to Chantev]

That is awful about your job!

I cannot stand the hypocrisy that, we're meant to look "professional" when applying for jobs, but for a lot of people, piercings, tattoos, or even hair styles often get priority over our actual skills and abilities to bring value to a company. Doesn't sound very professional to me.

That nerve regeneration research sounds really interesting, and I'm glad you're looking into different options for yourself. It always pays to be well informed =]

Good luck with your treatment! My next shots are next month. 3rd time's the charm, I hear =P

[Alex-mum]

Thanks Chris for sharing a really positive story about your journey and adjustment to facial palsy. It's a fab way to start the day to read your post!

Sounds like your focus on your strengths and whole self whilst normalising the anxiety of imperfection and body image, which as you said is a massive preoccupation for most young people, has helped to protect your self esteem and emotional adjustment to FP. Your rational thoughts are great to read, I'll store them away and plant the seeds in my little one over time. We're aiming for healthy adjustment and not active treatment due to massive nerve damage whilst he was in utero due to a tumour growing but will bear in mind the botox idea.

Hope life pans out well, I'm guessing with your positive mental attitude that it's pretty good already and if not you're harnessing your resources to make it so!

Inspirational story, thank you Chris and good luck!

Kerry

[Chris-Essen in reply to Alex-mum]

Thanks for the kind words!

I would say that the best thing is being treated like everyone else. And that's exactly what everyone around me does because, really, it's not a big deal. I make it more of a deal than anyone else, and so in the end I sought out Botox treatments for my own peace of mind, and not because people treated me differently. If that made sense... =P

I would also say that talking about the condition in a matter-of-fact way also helps. It then keeps it from being as much of an emotional burden, and becomes more akin to saying, "I have 10 fingers" or "I have blue eyes".

Best of luck with your little one, Kerry! They're already armed with a great mum, so they shouldn't have a problem ;]

[Alex-mum in reply to Chris-Essen]

Cool advice...to be fair our little chap wears a hearing aid processing unit on a headband like an Alice band...fab if you're a little girl not the most gender typical accessory for a little boy. Amazingly few people notice/ comment on it and to be fair it's far more noticeable than the fp. Still not sure what he'll make of wearing it when he's older but for now he loves it because he can hear better!

I know what you mean about frank and honest conversations to normalise stuff....my 6 year old just says it like it is to enquiring or nosey folk whilst I'm trying to formulate a sensitive response he's told them that his brother has a brain tumour, he's fine but can't close his eye properly, speaks a bit differently etc depending on the question. The look on the faces of the adult asking the question is usually a picture and I'm so proud of my kids timely disinhibited response before I've even managed to open my mouth!

Take care

Kerry

[c0311701]

Lol essay! Thank u for this it gives me some hope because i also am experiensing some synkinsis when i blink neck muscles move or try to flare my nose, and when i talk for 5mins non stop my eye waters. Im 14 months post onset and still struggling to accept this could be it for the rest of my life. I just hope that someday il come to terms with how i look

[Chris-Essen in reply to c0311701]

It does sound like it may be settling into a bit of synkinesis. The botox helped me out with random tendons sticking out on my neck when I did....well anything with my face. There are options, should it stay like that, so I would say definitely consult a neurologist!

Coming to terms with what happened did take me a while. I used to get really hung up on how I looked, like my face and how overweight I was. Would always get annoyed with what I saw in the mirror. At the end of the day though, my value and worth doesn't come from how straight my smile is or the numbers on the bathroom scale, and neither do yours!

You can't change what happened to you, but you can change your opinion of it!

Best of luck =]

[c0311701]

Hi Chris, thank u soo much for ur reply nd words of encouragement nd hope😊 sometimes im positive until i try to read bedtime story to my son nd i hear myself not pronouncing my fs & ps properly or when im upset my speech slurs then i get very sad sorry for putting a damper on u, especially now that u getting positive about urself. I also just wanted to ask u if u still feel stiffness in the affected side or it got better? And if so, can botox help with that too.

Does it also mean that you have to keep having botox every 3 months or after the one in july thats it?😏